Clinical Trials for the First Medication for CVS
Announcing Clinical Trials for a medication/device that could be the first ever medication specifically designated for treating CVS.

The CVSA and Alexza Pharmaceuticals would like to inform the CVSA membership of a clinical trial that has recently begun for adult patients with CVS.
The study involves three visits to a clinic and a 12-week at-home treatment period.
If you would like to learn more about this study, additional details can be found at:

The locations and contact information for the clinical trial sites where you can participate can be found at the bottom of this webpage.
If you would like to participate in this study, please check the clinical trials website
periodically, as additional clinical trial sites will be added as they are ready to start enrolling patients.

****Please note: All requests for more information or questions regarding the trials need to be directed to the trial website listed above.
One person can make a change!

Look at all these people making a change in their communities and for the CVS community! CVSA wants to thank each and every person who participated in International Awareness Day on March 5th! Not only did we make more people aware of CVS, with everyone's collaborative efforts we raised over $10,000 for CVSA to continue being the place to find hope for a cure and resources to support people on their CVS journey!

Live Streamer uses to raise money for CVSA

Tom D has a sister who has CVS and decided to use his live-stream platform to support CVSA. From Tom: "She was diagnosed with CVS when she was about 2, I believe and has been affected by it for all of her and my life. I have seen first hand what this disease can do and it is heart-wrenching as it is gut-wrenching. The pain and agony that my sister has gone through and what other patients have gone through is nothing short of torturous."

Despite his sister outgrowing CVS, Tom still feels compelled to help raise awareness and money to help find a cure.
Check out Tom's Facebook page for his next live-stream:

To support CVSA using live-stream, check out our Tiltify platform:
Our March Virtual Expert Presentation was given by Dr. David Levinthal. Dr. Levinthal talked about the association of CVS and Neuronal Excitability disorders like epilepsy and migraine. He also talked about how a therapy called Transcranial Magnetic Stimulation (TMS), used in epilepsy patients, might also be used for personalized CVS therapy.

You can watch the recording here!
I am a 30 something, fundraising professional, weightlifter, strongman competitor and a fitness enthusiast. One thing that most people don't know about me is that I have been suffering from a rare disease (Cyclic Vomiting Syndrome) for about 25 years. When I was diagnosed in first grade I was lucky that we lived in Waukesha County near Children's Hospital of Wisconsin, where there was a specialist to see. ....

This is just part of Kristyn's story that she shared for International Awareness Day. To read her full story and watch her video click here.
To share your story that you can personalize and update at any time with pictures, videos, and stories, check out our
Want to help raise CVS awareness year round?
Check out all the options at the CVSA store!

Join CVSA on Monday, April 12th, at 6 PM PST, for the monthly support call on our new Zoom platform! Have questions? Newly diagnosed? The support call is the place to get your answers.
Thank you to all that set up fundraisers on Facebook with Facebook Donations!

Please note that due to Facebook's algorithms and privacy restrictions, CVSA is unable to determine the dates that fundraisers take place.
If your CVSA fundraiser raised more than $200 please send a screenshot to the CVSA office to receive your complimentary 1 year membership, please email
Any fundraiser for CVSA, that raises at least $200, will receive a complimentary 1 year membership. Check out our fundraising page for ideas.